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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 18 of 18. This is the beginning of the thread.
Posted by Nurse Hot Flash on August 30, 2008, at 13:13:00
Does anyone ever feel like they are taking the same old meds, and getting the same old results, year after year? My son, who has schizophrenia, seems to be in that trap. His positive symptoms are under control, but the negative symptoms are always there. His doctor says that stabilization is improvement for him, but I can't seem to buy that argument.
Posted by Racer on August 30, 2008, at 14:12:46
In reply to Same old meds, same old results, posted by Nurse Hot Flash on August 30, 2008, at 13:13:00
I'm not sure it's the same thing, but I just told my psychopharmacologist that I am not looking for euthymia at this point -- I'm just looking for enough oomph to get me out of bed every day without planning to off myself.
I've tried so many medications, some multiple times, and sometimes I feel as though it's time to give up -- that I just don't have adequate quality of life, and euthanasia would be the most humane choice. He says that ain't an option, so I keep trying -- often quite reluctantly. In my case, I'm aware that I'm a big part of the problem -- partly biologically, partly psychologically. Biologically, I've had some weird reactions to some of the antidepressants I've tried -- hives, syncope, severely increased depression, etc. Things that my doctor could objectively say required discontinuation.
Psychologically, there are certain adverse effects I have very low tolerance for. That's a personal choice, to an extent -- we all have a personal cost/benefit ratio when it comes to adverse effects. In my case, for example, if a medication leaves me amotivated, apathetic, groggy, and so emotionally flat that pleasure really isn't within my range -- well, honestly, with the exception of grogginess, that sounds like what depression looks like to me. Add in the physical effects -- weight gain, constipation, sleep disturbances, etc -- subtract the suicidal ideation and impulses, and that's not an acceptable picture for me. Sometimes I am annoyed by myself when I refuse to tolerate that sort of thing, and I know that some of the doctors I've seen have been annoyed by it, too. I feel very fortunate that my current doctor is understanding -- if frustrated by the at best marginal results of treatment for me -- of the quality of life issues, and -- this really is a great guy -- even says that quality of life is subjective, so if I say it ain't worth it, that's all he needs to know.
My diagnostic picture is obviously quite different from your son's -- depression, anxiety, anorexia, and some OCD spectrum issues -- and I have neither experience nor knowledge of schizophrenia. I only know that my own situation is frustrating, demoralizing, and difficult to live with, for me and often for those close to me. Maybe it's only a symptom of my depression that leads me to think that all I can hope for is Good Enough, Stabilization, Improvement. At least I'm not watching it from outside, and I'm of an age that I often figure it doesn't much matter anymore if I ever achieve remission. (<< That's probably depression, but I think it would be much harder if I were younger and felt as if my life had more potential. At this point, a lot of the things I would want for myself really aren't possible anymore, which lowers the bar a hell of a lot.) I think in many ways your situation is much harder -- there's the feeling of impotence, that you can't make everything right for your son; and I'm assuming he's a good deal younger than I. It's always hard to watch someone one cares about suffer -- maybe harder than going through that suffering oneself.
I don't know that anything I've written here is helpful in any way, or even truly relevant to your question. I guess the short answer to your question is, "Yes, I do feel that way. Often."
Posted by Nurse Hot Flash on August 30, 2008, at 15:55:54
In reply to Re: Same old meds, same old results, posted by Racer on August 30, 2008, at 14:12:46
Racer, you did help me! As a result of your post I am going to try to get my son a new doctor. I am very happy you have one you like. You are a very brave person to keep trying (and re-trying) new meds. There is always a possibility that the right one will come along. Depression is a terrible disease and your experiences, though unfortunate, will probably benefit others trying to cope with their depression. Keep writing! We need to hear from you.
Posted by Phillipa on August 30, 2008, at 16:37:00
In reply to Re: Same old meds, same old results, posted by Nurse Hot Flash on August 30, 2008, at 15:55:54
What meds for scizophrenia has your Son tied. So sorry for his and your anguish. Clorzaril I've seen people do very well on in personal life. Love Phillipa
Posted by Nurse Hot Flash on August 30, 2008, at 18:45:35
In reply to Re: Same old meds, same old results » Nurse Hot Flash, posted by Phillipa on August 30, 2008, at 16:37:00
Currently he is on 30 mg of Abilify and 7.5 mg of Zprexa. We tried going to 5 mg of Zprexa, but he had more positive symptoms. I fear the side effect of diabetes from Zprexa, because he has a family history (his dad, and grandmother are diabetics). I can't imagine trying to get him to take an insulin shot every day. He won't even use plastic wrap in the kitchen because he once cut himself on the metal part of the package it comes in.
Posted by Phillipa on August 30, 2008, at 19:40:42
In reply to Re: Same old meds, same old results, posted by Nurse Hot Flash on August 30, 2008, at 18:45:35
May I assume it's paranoid schizophenia? Will he take his meds? If so that's half the battle. I understand about the zyprexa. Did you discuss this with his doc? Any suggestions of what you think might work and his age? Phllipa
Posted by bleauberry on August 30, 2008, at 21:33:52
In reply to Same old meds, same old results, posted by Nurse Hot Flash on August 30, 2008, at 13:13:00
> Does anyone ever feel like they are taking the same old meds, and getting the same old results, year after year? My son, who has schizophrenia, seems to be in that trap. His positive symptoms are under control, but the negative symptoms are always there. His doctor says that stabilization is improvement for him, but I can't seem to buy that argument.
I tend to agree with you. On one hand stabilization is important and is an improvement. On the other hand, it seems to me kind of a cop-out to not be aggressive and creative at greater improvement. That usually involves off-label uses of meds, or using meds of different classes that are not labeled by the pscyh book leaders as schizophrenia meds. I don't know what meds have been in your son's history, but there are lots of others. Doctors need to be more creative. Negative symptoms are for all practical purposes mirror images of depression as I see it. That widens the scope of possible meds by a longshot. I've even heard of benzos improving negative symptoms on a couple occasions, which makes no sense at all. But who cares. If it works it works. I mean, the point is, the doctor needs not be afraid to try stuff, even if it doesn't make sense. Actually, especially if it doesn't make sense. All the stuff that makes sense has been mediocre, right? Otherwise, you never know what you might have missed out on.
These meds are not predictable. Put some pressure on the doctor to try adding new stuff without changing the current meds.
For ideas, go to pubmed.com. Type in the search box "negative symptoms". Haven't tried that myself, but I bet you'll get a ton of hits. Take a few hours to look at them all. Most will be about various antipsychotics. But a few will show hidden surprises such as particular unsuspected ADs or benzos or whatever that worked in some trial or some case reports. Print that stuff out and bring it into the office. If it worked for someone else, it will work again for yet someone else.
Posted by Racer on August 31, 2008, at 1:13:27
In reply to Re: Same old meds, same old results » Nurse Hot Flash, posted by bleauberry on August 30, 2008, at 21:33:52
> > On the other hand, it seems to me kind of a cop-out to not be aggressive and creative at greater improvement.
In theory, of course I agree with you. "Response" may not mean acceptable quality of life -- it may just mean a different score on an objective chart which does not reflect the subjective experience of the individual. (And excuse me -- I'm tired, and not expressing myself very well.)
On the other hand, I really do know that no medication is going to provide euthymia for me at this point in my life. Working on finding a way to accommodate that reality is likely to be healthier for me -- removes the additional frustration, demoralization, and despair that comes with disappointment in med trial after med trial. (And the last few trials have had bad results -- bad enough I don't think my doctor would consider changing my meds on an outpatient basis, because the outcomes were just too seriously ungood, you know?) Right now, I'm fragile, I'm only moderately functional by any measure I consider valid -- and I'm at that point of equilibrium that any little thing could push me one way or the other.
Rather than risk the effects of another medication trial, I'm working on finding realistic compensatory mechanisms. I spend more time than I'd like to admit in my own slough of despond -- but I know how much worse it can get, and how fast it can get that way.
So -- on the one hand, of course the goal is full remission. On the other hand, there's a point at which we all have to say, "good enough" and accept less than perfection. Just like I gotta accept being much shorter than I wish to be, or having chronic joint pain -- some things ain't gonna change on accounta wishing, and sometimes the wishing hurts more than the lack.
And on the gripping hand...
Posted by Racer on August 31, 2008, at 1:16:36
In reply to I'm of two minds on this... » bleauberry, posted by Racer on August 31, 2008, at 1:13:27
I've had the most embarrassing day for verbal faux pas today -- the one above, for instance? That was not meant to be clever, and I'm mortified by it.
When we were discussing where to go for dinner tonight, I heard myself saying, "I have a yen for Japanese..."
It's like a bizarre verbal tic, and I really hope it's just being tired and not going to become a symptom of Being Racer Syndrome...
Posted by Nurse Hot Flash on August 31, 2008, at 9:56:03
In reply to Oh, I am so very sorry, everyone!, posted by Racer on August 31, 2008, at 1:16:36
It is so wonderful to have caring people respond to my post! My son has undifferentiated schizophrenia. He exhibits various strains, especially paranoid, and I think now he is more of a residual schizophrenic because he hasn't had many positive symptoms for a couple of years. He is 27, and was diagnosed at 18. P.S. Racer, no need for apology! All witt and wisdom welcome here, even if sometimes it is unconsciously done!
Posted by med_empowered on August 31, 2008, at 16:07:10
In reply to Re: Oh, I am so very sorry, everyone!, posted by Nurse Hot Flash on August 31, 2008, at 9:56:03
hey! Sorry about your son's situation. Has your son's doc thought about maybe reducing the number and/or dosage of antipsychotics? Sometimes if a benzo or anticonvulsant mood stabilizer is used (or both, I imagine), the dose of neuroleptic(s) can be lowered w/o losing adequate control over symptoms.
It seems to me that using something besides another antipsychotic w/ the abilify might be a good call...Abilify is pretty high potency; @ 30mgs, you're looking at over 90% D2 blockade...it seems to me (as a total non-expert who just happens to have taken the same meds) that the Zyprexa is basically functioning as a tranquilizer/sedative. I would imagine the benefits would mostly be from the sedation and maybe from the serotonin-antagonist effects. Also, I would think that a low dose of Zyprexa might help smooth out akathisia/agitation from the Abilify (and lots of docs *still* mistake antipsychotic-induced problems for an exacerbation of the underlying illness).
Has your son's doc talked about some sort of psycosocial treatment, like CBT or vocational rehab? That sort of thing might help bring your son out of his rut.
Sometimes stimulating drugs help when there are a whole lot of negative symptoms. That's probably not an option until the positive symptoms have been under control for a good while, but...Provigil and Ritalin have both been used with good results in some people. I imagine the new dopamine agonists might also be useful.
Also, sometimes depression looks a whole lot like negative symptoms. Neuroleptic-Induced Dysphoria and the Neuroleptic-Induced Deficit Syndrome can both also look like "negative symptoms." NID and NIDS are supposedly more common with older antipsychotics (especially high-doses of high-potency ones), but the atypicals can also cause social withdrawal, dysphoria, suicidality, etc., so its not as if the problem is limited to, say, Haldol and Prolixin.
Good luck!
Posted by Phillipa on August 31, 2008, at 19:20:05
In reply to Re: Same old meds, same old results, posted by Nurse Hot Flash on August 30, 2008, at 18:45:35
That's quite a few years. Assuming he has many antipsychotic med trials what are his symtoms. I worked with scizophrenics. I just loved them to death as when their med combo was correct they were the nicest and totally different people. One I knew had spiritual warfare in his mind when admitted to hospital but that was due to going off is meds once on them in a few weeks was doing great. That's why I ask about his behavioral symtems as sometimes bipolar in a manic state can mimic schizophrenia but sounds like in all those years that would have surficed. I'm assuming he has had psych testing? Sorry to be so nosey. Love Phillipa
Posted by Nurse Hot Flash on August 31, 2008, at 19:52:11
In reply to Re: Same old meds, same old results » Nurse Hot Flash, posted by Phillipa on August 31, 2008, at 19:20:05
Thanks to "med empowered" (love your screen name!) and to Phillipa for your input. I think the Zyprexa was added as a seditive, because my son was on only Abilify until he started slipping into psychosis with a lot of irritability.
Originally 10 mg of Zyprexa was added. I thought this was going to be needed only temporarily, so, at my urging, the doctor tried to get him off by taking him down to 7.5mg. He did OK there, but when we went to 5 mg, he started slipping away again, so we now just get refill after refill.
In the doctor's defense, he is working at a public health facility out of the goodness of his heart. He has a private practice also. I think his mission is just to keep as many folks as possible from falling off the edge.
The idea of adding something like Ritalin is enticing. I will bring that up. In the past we have tried Haldol and Risperdol, mainly because they were injectible (he was not very med compliant in the past, but is OK now).
We did try the psychosocial treatments, but he had to be forced to go. He will not admit he has a problem. He went to intensive outpatient therapy, and came out and told me "Mom, I don't belong there. Everyone just wants to kill themselves."
I asked about group therapy with people diagnosed with schizophrenia and was told "you can't put six or seven people who all think they are God in the same room together". Point well taken.
Someone once told me the difference between bi-polar and schizophrenia is that bi-polar patients want to build castles in the air, but schizophrenics live in them. That seems to be the case with my poor son. He is never manic, but has dellusions that he has held on to for years.
PS Phillipa - you are not nosey! I appreciate your concern and help!
Posted by Phillipa on August 31, 2008, at 21:06:59
In reply to Re: Same old meds, same old results, posted by Nurse Hot Flash on August 31, 2008, at 19:52:11
You sound like a very well informed Mother. This is excellent. There is a poster I hope sees this thread as he somewhat has a form of the disorder and is very educated on it.
Yes you're right about the difference between bipolar and schizophenia a great analogy by the way.
I'm so glad he is complaint with meds now. I know clozaril is not new anymore but it's worth a go. I'm sure you know of the white blood count that is taken weekly. But where other meds have failed I did see miracles occurr and none got the aggranulatosis. At the time I nursed they didn't use stimulants and don't understand why they would. But I don't know so much. I'm sure you have also google scizophenia. So that is not a suggestion. Perhaps your doc could arrange a consult with another. Sometimes two heads are better than one. Babblemail me anytime you like. Which is click on my name in blue a screen comes up and you type in a message like an e-mail without giving yours out. I do feel for both of you. Love Phillipa
Posted by Kath on September 18, 2008, at 20:47:45
In reply to Same old meds, same old results, posted by Nurse Hot Flash on August 30, 2008, at 13:13:00
> Does anyone ever feel like they are taking the same old meds, and getting the same old results, year after year? My son, who has schizophrenia, seems to be in that trap. His positive symptoms are under control, but the negative symptoms are always there. His doctor says that stabilization is improvement for him, but I can't seem to buy that argument.
*********I can relate!!! although my son has been on meds for not quite 2 years, there has been NO mention of getting him off, except when I brought it up to his pdoc. She said that 'we'd want 3 months at least - preferrably 6 months symptom-free before doing that'......
but NO mention of it since.My daughter (32) pointed out that his meds can cause SERIOUS side effects that are permanent - that's right - permanent, even after stopping the meds....he's already got weight gain. So on hearing about that, he decided to stop. It was all I could do to talk him into doing it gradually. he stopped Seroquel completely a few weeks ago. No apparent problems. he's now cutting back gradually on risperidol. I read your original post on the Withdrawal board & want to give you this link.
This link actually was in a newsletter that the CMHA (Canadian mental Health Association) send me (as a Mom) in the HOPE Program that my son is part of (Helping Overcome Psychosis Early).
http://mail.google.com/mail/?ui=2&ik=a8b3fd6b14&attid=0.1&disp=vah&view=att&th=11aac51c09c155a2
It's about orthomolecular medicine. I haven't yet read - just skimmed the article, but I have heard that B-Vitamins have been VERY helpful for people with schizophrenia.
As far as I can gather, my son's main trigger is drug use - street drugs :-(
Anyway, since he's off seroquel & cut back a bit on Risperidol, he's much 'sharper' - more like his old self....fewer of the 'negative' symptoms.
Please feel free to babblemail me if you want to. I find it VERY hard being a mother of a young man with mental health problems.
Nobody EVER told us of some of the negative side effects of the meds my son was on! I think that is shameful.
I send you supportive hugs, Kath
PS I didn't read this 'thread' - just the original post.
Posted by Kath on September 18, 2008, at 20:55:48
In reply to Re: Same old meds, same old results, posted by Racer on August 30, 2008, at 14:12:46
> I'm not sure it's the same thing, but I just told my psychopharmacologist that I am not looking for euthymia at this point -- I'm just looking for enough oomph to get me out of bed every day without planning to off myself.
********Hi Racer,
I know you are dealing with way more than I am...my issues are anxiety, probably depression, definitely Seasonal Affective Disorder.
I just want to let you know that I dread going through the 'how to drag myself out of bed every day without wanting to off myself' thing this winter like I experienced last winter.
Last year I finally found that 5HTP, St. John's Wort & a strong SAD light lamp helped, as well as Dr. Reckeweg's homeopathic R184 drops.
I kept taking 1 5HTP & 1 SJW all summer (was afraid to stop) & have now upped the SJW to 2 & will up it more. Day before yesterday I moved the SAD lamp beside my bed & am totally blown away by the effect looking into it has on my mood!! I think that this year I'm tackling the SAD before it gets a hold. Last year it kicked in, in late Aug. (wasn't taking any of the pills for it that I have been this summer). This year, it's only started to kick in about mid-Sept.I'm telling you this just in case you might suffer from SAD also & perhaps not even realize it. Last year I interpretted it as Depression.
I hope this post isn't offensive for you.
luv, Kath
Posted by Kath on September 18, 2008, at 20:58:57
In reply to Oh, I am so very sorry, everyone!, posted by Racer on August 31, 2008, at 1:16:36
Jeez Racer - I didn't even notice! LOL And I probably wouldn't have noticed the 'yen' one either!!
(((((((((((((((you))))))))))))))))
luv, Kath
Posted by Kath on September 18, 2008, at 21:04:26
In reply to negative symptoms..., posted by med_empowered on August 31, 2008, at 16:07:10
> Also, sometimes depression looks a whole lot like negative symptoms. Neuroleptic-Induced Dysphoria and the Neuroleptic-Induced Deficit Syndrome can both also look like "negative symptoms."
********OH MY GOSH. This just clicked!!!
I was saying that my son is 'sharper' now that he's not taking Seroquel & has cut back even a little on Risperidol.
I just realized - or remembered - that I've wondered all along (for the almost 2 year) how sometimes he's 'with it' & 'sharp' & sort of 'himself - how he used to be. And other times he's sort of zombie-ish (that's putting it too strongly, but gets the idea across clearly). And I realize that since he's been living with us for 4 months this summer, sometimes he doesn't take his meds & I truly do notice that when he doesn't take them, he's way sharper than when he does.
I really DO wonder - in fact I do believe that some of the "negative symptoms" could EASILY be caused by the medications themselves!
Jeez. What a situation.
Kath
This is the end of the thread.
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